advocating for aleigha – my rare disease story

Month: November 2015

There seems to be a really big disconnect between those battling with chronic illness and those who are not. I can’t tell you how many times I hear, “I hope you get better,” or, “get well soon.” The fact is that most of these comments are purely backed with good intention. I mean, usually it’s the right thing to say. Most people get sick and then they get better. But what if you never stop being sick?

When I got sick, I never recovered and unless there are some radical changes in research and funding, there is no way that I ever will. So, when I hear people say, “get well” or put off plans for when I am healthy it seems almost like a slap in the face. No need to kick a girl while she’s down. Of course, most times these people mean well or don’t necessarily know what to say or how to act. It’s something they have probably never had to deal with or, sometimes, even heard of. They don’t know and that’s okay. What isn’t okay is when people are informed and make a conscious decision to ignore the facts. There are currently 133 million people in the United States living with at least one chronic illness. While some of these can be managed well, many of them cannot. I, for example, have a slew of rare diseases that have no cure, little research to shed light on management options, and a life-altering (and limiting) prognosis. And even though I have had these life-changing illnesses for over a year, it still amazes me how many people (even those who I am quite close with) assume I am going to get better. It is vitally important that the people in my life make an effort to understand my prognosis in order for them to understand me. So when people refuse to accept that I won’t be getting better anytime soon, it’s sort of like saying I’m not invested enough to care.

I’m getting pretty exhausted just writing this, to be honest. So to quickly wrap it up, making an effort to understand and accept those battling with chronic illness is REALLY important. Everyone wants the people in their lives to make an effort and everybody wants to be understood. Now, I’m going to take a nap.